Combating Prostate and other cancers via Proton Therapy

Former proton patient and member of the Brotherhood of the Balloon, Steve Snyder of Roanoke Rapids, NC was treated with proton therapy at MD Anderson in 2016. Today he’s feeling great and cycles 150-200 miles per week. “I’m as healthy as an ox!” Steve says. “I would like to thank the BOB for guiding me to the data I needed to support my battle with Blue Cross Blue Shield for proton therapy. Also, without reading stories of denials and appeals from former patients and BOB members, I may have given up; those stories gave me hope to fight on … Thank you also for publishing your newsletter. Without it, my health would not be what is it today.” In the photo below, Steve (4th in line wearing a blue jersey) is cycling from the mountains in western North Carolina to the coast (more than 500 miles!). Keep it up, Steve!

If you’re interested in learning more about proton therapy, visit the Brotherhood of the Balloon website. If you’ve already received proton therapy for prostate cancer, sign up to become a BOB member. It’s free!

My name is Deb Hickey. I work alongside my father, Bob Marckini, and his “ministry,” the Brotherhood of the Balloon. The BOB is a group of prostate cancer patients who have chosen conformal proton beam radiation therapy (proton treatment). The organization was formed in December 2000 by Bob and several other patients of the Loma Linda University Cancer Center. Today we have nearly 10,000 members from all 50 states and 39 different countries. Members represent all operating proton centers in the U.S. as well as four proton centers in Europe and Asia.

One of our earliest members is Jim Tuggey. Jim launched this blog in 2004 after his successful treatment with proton therapy at LLUCC in 1999. He wrote in a post, “For me, the results have been dramatic – I went to Loma Linda with a PSA of 15.9 in July 1999 and now my PSA as of November 16, 2010 is less than 0.1, demonstrating excellent results.” Jim continued updating this blog for another four years until his health began to decline due to age, and he couldn’t keep up with it. His nephew, Jay Rolls, took the reigns and continued the blog for several more years before offering to transition the site to us so that we could continue to spread the word and educate others about proton therapy. We are honored to carry on the torch for Jim, and we plan on sharing our members’ stories and other valuable and timely information about proton therapy through this blog.

We find it fitting to write our first post about Jim’s brother-in-law, Floyd Jordan.

Floyd is also a BOB member, having been treated with proton therapy for his prostate cancer in 2012. Floyd learned about proton therapy from Jim. After Jim completed treatment, he shared his story with anyone who would listen. Luckily, Floyd was all ears. So when Floyd received the dreaded diagnosis years later, he’d already made up his mind and felt confident about his decision.

“Since my proton treatment ended, my PSA readings have been low and my activity level has been high,” Floyd said. Floyd loves to fish, travel, do wood working, and serve others. He appreciates life and considers each day a blessing. Floyd follows in his brother-in-laws footsteps and spreads the word about proton therapy to others whenever and wherever he can. “It has been wonderful to share my story of proton therapy,” Floyd said. “With Bob Marckini’s book, the BOB Tales monthly newsletter, and material from Loma Linda, I’ve had a lot of help convincing others to have protons.”

Thank you, Floyd, for helping others find their way to proton therapy. We look forward to sharing other member stories soon. Stay tuned!

I’m the “younger” nephew of this web site’s owner (Jim Tuggey), and manage the web site, administer the WordPress blog software, and generally take care of all things tech. Our web site just hit 10 years, and it’s been very rewarding to provide this public service for others who are faced with anything related to cancer and/or the prostate. As a consequence, I’ve learned a lot about prostate cancer!

So imagine my surprise (and the irony) when I recently learned of having a high PSA reading (6.5 ng/mL). At 53, I knew I had been putting off the big physical you should undertake when you turn 50 – so I finally got off my butt and went in for my checkup. Unfortunately, it had been five years since I had last had a physical, so I didn’t have a baseline PSA reading to compare. (Now in Denver, I called my doctor’s office in Atlanta who informed me my records were in long term storage).

One thing was clear: I had a peace of mind knowing that if I needed serious treatment, proton therapy was the likely avenue I would pursue.

Off to the Urologist I went, and I liked the doctor I found – Dr. Alexander Philpott of the Urology Center of Colorado (TUCC). What transpired next was fairly typical – an exam, and recommendation of a biopsy, and then the biopsy itself. My exam was normal, but the out of the blue 6.5 with no prior baseline led Dr. Philpott to his biopsy recommendation. From 12 samples, we learned that there was no signs of cancer. While I knew right away that my PSA of 6.5 was not a death sentence, I also know that a negative biopsy might not mean I’m free and clear. So I’ll have to pay much closer attention to this moving forward.

Long ago when I started this web site, I decided to do it for free and only feature my own experiences with Protons and the experiences of other Proton treated Cancer survivors, both men and women.

If you have been treated with Protons for any cancer, I would welcome your comments. The interesting fact is that we started with one busy source in the USA (Loma Linda) and now our country has more than 20 treatment centers.

My wife of 59 years passed away in January 2014 and I can assure you that she was an advocate for using Protons as we saw more and more success.

The bottom line is that Protons have allowed me this victory over “Prostate Cancer” and I have seen the birth of a young lady in our family and two more children.

My thanks goes out to Bob Marckini and his daughter, who get the latest information to us. My treatment was with Dr. Carl Rossi at Loma Linda and his wonderful Case Manager at the time Sharon. These folks and many others made sure that the Proton did the job and it’s hard to remember that it was over on August 27, 1999.

The awards from Healthline stating that we had two separate “Blogs” due to excellence, reflecting on Mr. Jay Rolls, my nephew, who provides his business and technical genius that allows me to get the word out there to all of you.

I hope the rest of 2014 and the arrival of 2015 move this effort ever forward and I can answer with confidence emails from potential patients and add to the great and detailed information now available, including the Videos on this website.

PS – I still have NO side effects from the Proton since treatment in 1999.

In my case, my local urologist called in April of 2012 with the news that my prostate biopsy showed cancer. Gleason score was 3+4 for a total of 7. PSA was 9. (Current PSA is 0.37)

The decision for treatment was easy. My brother-in-law owner of this blog, Jim Tuggey, had gone to Loma Linda in 1999 for proton treatment of his prostate cancer and has been singing the praises of the treatment and the people ever since.

So I called the above number, sent the necessary medical records, flew to Southern California for a first meeting, came home and packed. My wife Judy and I drove to Loma Linda for my first treatment in mid-June of that year.

The nine weeks we spent at LLUMC was one of the best vacations we ever had and we have traveled a lot. The people at LLUMC are wonderful – they truly care. The treatment each day, five days a week, normally took little time, leaving the rest of the day for any activity of our choosing. The get-togethers on Tuesday, Wednesday and Thursday evenings were great times. The housing options were superb. And the other patients represent people who searched out several options of treatment, and did not simply accept the recommendation of the urologist back home and decided that proton treatment is the better option.

This just in from the UF Proton Therapy Institute – I’ve coped their table below. As they state:

“Part of the decision-making process is to learn each treatment’s potential for cure (disease control) and for maintaining a good quality of life after treatment. The following table shows the most current prostate cancer patient outcomes data available for both proton therapy and surgery.”

Thanks to my old flight instructor “Doc” Harkins for passing this along…….

Decision Points

Proton Therapy for Prostate Cancer

Surgery for Prostate Cancer

Disease Control*

99%-76%1

84%-60%2,3

Treatment

Major complication rate

1%1**

28.6%4

Invasive Procedure

No

Yes

Long Recovery Time

No

Yes

Fatigue

No

Yes

30-day mortality rate

0%

0.5%4

Rehospitalization rate

0% (N/A)

4.5%4

Side Effects
Percent of patients who experience a change post treatment

Incontinence

0%1

6%-30%4

Impotence

34%1

60%-80%1

Inguinal hernia

0% (N/A)

7%-21%4

Fecal Incontinence

1.4%1

17%-32%5

*Disease control is defined as freedom from clinical or PSA progression at five years.

MARCH 2014 is here and there is a lot said in the latest “Bob Tales”. (LINK HERE)

How lucky we are to have a smart, dedicated man in Bob Marckini who is always up to date on the status of protons. Bob has developed a complete program with the support of the Loma Linda team and we are all benefitting from his hard work.

Deb Hickey is right there keeping the show on the road and we winners in the Prostate Cure race are exceedingly happy with the results. Results count and given that, we already accept the impact of what has really been the impacts using “Protons”, vis a vis the crowd of “Naysayers”.

I have full faith in the use of Protons and our input broadens each time a new person reports “Proton” success. Here I am about to reach 85 and have no Prostate issues.

My personal burden has been lifted thanks to Jay Rolls, a close relation, who knows how to write English and manage much of the Technical side of “Charter” in Denver. He administers this site for me.

If you can call me between 8:30am and 5:30pm, I should be here to talk.

Here’s an interesting article about a prostate cancer patient and how he dealt with his treatment options within the UK. Link to article is HERE. Without any options to obtain proton treatment inside his own country, he turned to a treatment center on the European continent – over in Prague, Czech Republic.

Jim Tuggey here on February 28th 2014. When you look at the spread of Proton facilities in our country and recognize the growing company of other Proton Centers that exist in other countries, it really weakens the case for the “Naysayers”. I have no cancer in my “prostate” and can round up quite a list of men who have had the same success with the “Proton”. That does not even take into account the other successes using Protons that are not Prostate issues but a much wider scope of challenges that have been met for men and women! My colleagues and I delight in the fact that Loma Linda met the challenge when so many expressed doubt. I think I counted nineteen Proton centers in our country and more to come.

I thought it would be helpful to readers and visitors to have a visual map of the proton treatment centers around the US. Many people will want to know geographically where the nearest center is to their home, and this gives you a quick glance of both centers in operations, as well as those that are under construction. If you notice a center that is missing, please let us know – post a comment to this blog post.

We grant others permission to use these graphics as long as you give credit back to ProstateBlog.com.

Click on the Map for a larger version. For a list of all the facilities and links to their web pages, you can go HERE.